Describe your life prior to diagnosis:
I was a spirited and active dancer. I was always on the thin side and often got stomachaches. I remember doctors asking me if I was bulimic. Looking back at my dance pictures from junior high school, I am always shocked by just how thin I was.
How did you come to know (or suspect) that you have celiac disease?
I got a really bad cold and fever. I stayed home sick for a week, going in and out of the doctor. At first they thought it was mono, because I would sleep 16+ hours a day. Then I didn’t get better. I missed two months of school that year.
Eventually my pediatrician said he was going to run a blood test to rule out celiac disease. He didn’t think it was celiac disease, but he would check, just in case. Lo and behold, it was.
Describe your experience living with celiac disease:
I started gaining weight roughly a year and a half after diagnosis, and that’s when I would say most of my physical symptoms went away.
I was in junior high school at the time. Not only are these years formative and you’re already trying to fit in, but suddenly you have to bring your own food to birthday parties and can’t eat the cake. My mental health took a dive and I became clinically depressed when I was 17. I still deal with many mental health issues because of celiac disease—you don’t forget the days of crying on the floor in front of your pantry because you have nothing to eat.
It’s hard. Months before I was diagnosed at 15, I decided I wanted to be an English as a second language (ESL) teacher abroad, but celiac disease put a lot of my dreams on hold. Learning that gluten is in soy sauce and therefore eating at Korean restaurants is nearly impossible forced me to reevaluate—my health or my dreams?
I am still holding out on a medicine that will allow me to go abroad safely. On the other hand, my friends and family are wonderful. They all understand what I can and can’t eat, and will pass me labels to read if they are unsure. It’s nice to have people who care about and accommodate me. However, restaurants are still a nightmare when I travel for work. There are times I just expect to get sick.
Is there anything else you’d like to add to your story?
Distilled alcohols are usually okay. That was fun to learn when I turned 21!
